The Longer I Live With Lupus--The Less I Understand It

The Longer I Live With Lupus--

The Less I Understand It.

Marilyn Celeste Morris

Lupus is a debilitating and life-threatening disease that causes the immune system to go awry and attack the body's own cells and organs, including the heart, lungs, kidneys, and brain. Its heath consequences can include heart attacks, strokes, seizures, organ failure, disability, and premature death. Approximately 1.5 million Americans, and at least five million people around the world, have a form of lupus.

Now, you would think after having been diagnosed with SLE (systemic lupus erythematosus) since 1988 and dealing with it on a daily basis, I would be accustomed to its quirks.

That would be the way of most chronic diseases, you know. Most diseases have a predictable course, and meds are pretty standard, and the person knows pretty much what to expect.

Not so with lupus. Each person is affected differently. I know one woman who absolutely denies that she has lupus, even though she takes anti-seizure medications, because she doesn’t want to lose her job. She attended lupus support group meetings only briefly several years ago and has since lapsed into her “lurk” mode. I know of another person whose first and only symptom was that her kidneys quit functioning. No early warning signs, no great fatigue, joint aches, etc. – just sudden kidney failure. She took another approach from the friend with seizures: she learned to make her own bread without salt, everything she brought into her house was salt free, and she followed her doctor’s instructions to the letter. She’s better, now.

However, I can’t say for certain that either of those women will remain symptom – free. Or where the disease will strike next. Because it will. Definitely, it will strike again. My own lupus is snoozing, right this minute, but it may wake grumpy and hell-bent on rampaging through my body seeking a new, untested area. Or it may return to its old familiar haunts, that of my joints and lungs.
I was reminded once again of its quirks at a lupus symposium held last week at the University of Texas, Dallas campus. Of about one hundred persons there, I can safely say, none of us had exactly the same experiences at the same time. Several were newly diagnosed, bewildered by the suddenness of their illness, and the shock of knowing there is no cure and treatment varies in each individual.

Most of us, however, rely on the tried-and-true use of steroids (to reduce the swelling of joints) and Plaquenil, an anti-malerial that was discovered quite by accident to have a remitting effect on lupus activity. However, the use of steroids causes extreme weight gain with a “moon-face” effect, thus causing yet another crushing blow to the patient, and taking Plaquenil requires a yearly visit to the ophthalmologist to ensure vision is retained. As I succinctly summed it up after my initial diagnosis and given a prescription for Plaquenil with the caution that I might lose my eyesight: “Oh, I get it. I can either hurt or go blind?”
There are days I still feel that way – conflicted and afflicted. Conflicted about the treatment for lupus, and afflicted by its limitations on me for that day. And yet, I have learned to rely on those last two words as gospel truth: “That day.” It won’t last forever. Whatever is going on inside my body will not last forever. It will either get better, get worse, go away for a while, or I can learn to live with it, one day at a time.

At this point I must relate the experience I perceived of one person in the audience of lupus patients. Although she had been diagnosed at 11 years of age, and she is now in her mid-twenties, she is still seeking answers. How long will this last? Will I keep getting sick with the same symptoms? How can I file for disability when they tell me I’m not sick enough?

We on the panel and in the audience attempted to answer her questions, but it soon began to dawn on me that she wasn’t willing to listen to our answers.
She wanted attention. For her own particular set of symptoms, for that day. And we were not set up tot deal with one individual’s case history at the expense of others. I began to realize that since the age of 11, she had been playing “Victim.” And she had no idea she was doing that. Yet in her baby-sized voice, and her singsong questions, she was reverting to childhood. Soon some of us “old timers” began exchanging knowing looks, and the moderator began somewhat unsuccessfully to cut off her incessant questions. Yet how could we squelch someone’s quest for answers? After all, isn’t that what we were there for?

Yes and no. Yes, we could provide her with the information that we are all affected differently at different times. And no, we couldn’t recommend any one treatment that she hasn’t already had and she needed to ask her own doctors. In an age where we can pull up an answer to almost any question in the universe by using a Google search, medicine cannot give certain answers to an uncertain disease. And that’s a shame.

I know now what I should have told her. (Don’t you just love it when you leave an argument or a situation where you think, “I should have said…..?) I was told early on by a very frustrated doctor who told me I “might” have lupus. “You will find that lupus is a do-it-yourself- disease. You will have to become your own best physician.”

Our fifteen minute office visit is over. Pay on the way out, please.
The Lupus Foundation of America is the nation's leading nonprofit voluntary health organization dedicated to lupus. The LFA has a dual mission: to provide support and services to all people affected by lupus, and to fund research to find the causes of and cure for lupus. The LFA has a nationwide network of nearly 300 chapters, branches and support groups. Visit www.lupus.org or call toll-free 1-888-38-LUPUS (1-888-385-8787) for more information.






Marilyn Celeste Morris, Author
Sabbath's Room: http://www/SabbathsRoom.blogspot.com/
Once a Brat: http://www.onceabratbookblog.blogspot.com/;
Diagnosis: Lupus: The Intimate Journal of a Lupus Patient http://www.TheLadyWithLupus.blogspot.com/
Coming Soon: A New Novel: The Women of Camp Sobingo - http://www.thewomenofcampsobingo.blogspot.com/